WHAT IS AUTISM?
Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of 88 children age 8 will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012). Males are four times more likely to have an ASD than females.
The hallmark feature of ASD is impaired social interaction. As early as infancy, a baby with ASD may be unresponsive to people or focus intently on one item to the exclusion of others for long periods of time. A child with ASD may appear to develop normally and then withdraw and become indifferent to social engagement.
Children with an ASD may fail to respond to their names and often avoid eye contact with other people. They have difficulty interpreting what others are thinking or feeling because they can’t understand social cues, such as tone of voice or facial expressions, and don’t watch other people’s faces for clues about appropriate behavior. They lack empathy.
Many children with an ASD engage in repetitive movements such as rocking and twirling, or in self-abusive behavior such as biting or head-banging. They also tend to start speaking later than other children and may refer to themselves by name instead of “I” or “me.” Children with an ASD don’t know how to play interactively with other children. Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.
Children with characteristics of an ASD may have co-occurring conditions, including Fragile X syndrome (which causes mental retardation), tuberous sclerosis, epileptic seizures, Tourette syndrome, learning disabilities, and attention deficit disorder. About 20 to 30 percent of children with an ASD develop epilepsy by the time they reach adulthood.
ASD varies widely in severity and symptoms and may go unrecognized, especially in mildly affected children or when it is masked by more debilitating handicaps. Very early indicators that require evaluation by an expert include:
Later indicators include:
Health care providers will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parent observations, while others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of an ASD, a more comprehensive evaluation is usually indicated.
A comprehensive evaluation requires a multidisciplinary team, including a psychologist, neurologist, psychiatrist, speech therapist, and other professionals who diagnose children with ASDs. The team members will conduct a thorough neurological assessment and in-depth cognitive and language testing. Because hearing problems can cause behaviors that could be mistaken for an ASD, children with delayed speech development should also have their hearing tested.
Children with some symptoms of an ASD but not enough to be diagnosed with classical autism are often diagnosed with PDD-NOS. Children with autistic behaviors but well-developed language skills are often diagnosed with Asperger syndrome. Much rarer are children who may be diagnosed with childhood disintegrative disorder, in which they develop normally and then suddenly deteriorate between the ages of 3 to 10 years and show marked autistic behaviors.
WHAT CAUSES AUTISM?
Scientists aren’t certain about what causes ASD, but it’s likely that both genetics and environment play a role. Researchers have identified a number of genes associated with the disorder. Studies of people with ASD have found irregularities in several regions of the brain. Other studies suggest that people with ASD have abnormal levels of serotonin or other neurotransmitters in the brain. These abnormalities suggest that ASD could result from the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth and that regulate how brain cells communicate with each other, possibly due to the influence of environmental factors on gene function. While these findings are intriguing, they are preliminary and require further study. The theory that parental practices are responsible for ASD has long been disproved.
Twin and family studies strongly suggest that some people have a genetic predisposition to autism. Identical twin studies show that if one twin is affected, there is up to a 90 percent chance the other twin will be affected. There are a number of studies in progress to determine the specific genetic factors associated with the development of ASD. In families with one child with ASD, the risk of having a second child with the disorder is approximately 5 percent, or one in 20. This is greater than the risk for the general population. Researchers are looking for clues about which genes contribute to this increased susceptibility. In some cases, parents and other relatives of a child with ASD show mild impairments in social and communicative skills or engage in repetitive behaviors. Evidence also suggests that some emotional disorders, such as bipolar disorder, occur more frequently than average in the families of people with ASD.
For many children, symptoms improve with treatment and with age. Children whose language skills regress early in life—before the age of 3—appear to have a higher than normal risk of developing epilepsy or seizure-like brain activity. During adolescence, some children with an ASD may become depressed or experience behavioral problems, and their treatment may need some modification as they transition to adulthood. People with an ASD usually continue to need services and supports as they get older, but many are able to work successfully and live independently or within a supportive environment.
There is no cure for ASDs. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that meet the specific needs of individual children. Most health care professionals agree that the earlier the intervention, the better.
Educational/behavioral interventions: Therapists use highly structured and intensive skill-oriented training sessions to help children develop social and language skills, such as Applied Behavioral Analysis. Family counseling for the parents and siblings of children with an ASD often helps families cope with the particular challenges of living with a child with an ASD.
Medications: Doctors may prescribe medications for treatment of specific autism-related symptoms, such as anxiety, depression, or obsessive-compulsive disorder. Antipsychotic medications are used to treat severe behavioral problems. Seizures can be treated with one or more anticonvulsant drugs. Medication used to treat people with attention deficit disorder can be used effectively to help decrease impulsivity and hyperactivity.
Other therapies: There are a number of controversial therapies or interventions available, but few, if any, are supported by scientific studies. Parents should use caution before adopting any unproven treatments. Although dietary interventions have been helpful in some children, parents should be careful that their child’s nutritional status is carefully followed.
SPECIAL DIETS FOR CHILDREN WITH AUTISM
While mainstream medical practitioners rarely recommend special diets for autism, many parents will hear of the success of such diets through websites, books, friends and conferences. The science around such diets is sketchy, but there are plenty of anecdotal stories of special diets having a profound and positive impact on children with autism.
The gluten (wheat) free, casein (dairy) free diet is the most popular of the specialized diets, and there is evidence that the diet is often helpful in lessening autistic symptoms such as impulsive behaviors, lack of focus, and even speech problems. But wheat and dairy are a part of almost everything we serve in the United States -- and keeping a child away from ice cream, pizza, milk, and most snack foods and cereals is no small task.
So, what does it take to start a gluten-free, casein-free (GFCF) diet?
Identifying Gluten and Casein in Your Child's Diet: Removing gluten and casein from a child's diet is not as simple as saying goodbye to milk and bread. According to Carol Ann Brannon, a nutritionist who specializes in diets for children with autism, gluten is not only ubiquitous, but may also find its way into your child's system through the skin:
"Gluten is found in wheat, rye, barley, oats, spelt, and any derivatives of these grains, including, but not limited to malt grain-starches, malt wash, hydrolyzed vegetable/plant proteins, grain vinegar, soy sauce, and natural flavorings. Casein is found in milk and milk products from mammals....Gluten is in even in Play-Dough, adhesive on stamps and stickers, and many hygiene products. Soy, another common food allergen, is in many foods and hand lotions, make-up, etc."
Starting Your Autistic Child on a GFCF Diet: According to Brannon, there are two ways to start a GFCF diet: “dive in head first” or the slower, “get your feet wet” approach.
The “dive in head first” parents prefer to go GFCF all at once and decide to place the entire family on the diet. Often, siblings and parents may also experience benefits from the diet. The “get your feet wet” parents opt to go gluten-free first, and then progress to excluding casein-containing foods and beverages.
An increasing number of GF foods are available due to the increase in celiac disease. A parent should select the approach that best suits their personality and their lifestyle. Many parents begin the diet with dread and fear, but soon find it is more manageable than they had imagined. GFCF diet support groups can be a tremendous help to parents. In addition, there are many websites and blogs for parents.
What Can My Child Eat on a GFCF Diet?: In general, says Brannon, "Children can eat a wide variety of meat, chicken, eggs, fruits, and vegetables -– anything that does not contain wheat gluten or casein. It is generally recommended that organic, whole GFCF foods be consumed whenever possible."
GFCF advocates caution that even a little bit of wheat or dairy could have a big impact on a child with autism. To avoid accidentally eating the wrong foods, it's important to read labels carefully -- wheat and dairy are often "hidden" ingredients in packaged products. It's also very important to inform teachers, therapists, and other adults in your child's life that he is now wheat and dairy free.
Campbell,DB et al. "A genetic variant that disrupts MET transcription is associated with autism." Proc Natl Acad Sci USA 2006 Nov 7;103(45):16834-9.
Interview with Carol Ann Brannon, MS, RD, LD, Nutrition Therapist
Interview with Dr. Cynthia Molloy, M.D., M.S. Assistant Professor of Pediatrics, Center for Epidemiology and Biostatistics, Cincinnati Children's Hospital Medical Center, March 13, 2007.
Jyonouchi H, Geng L, Ruby A, Zimmerman-Bier B. "Dysregulated innate immune responses in young children with autism spectrum disorders: their relationship to gastrointestinal symptoms and dietary intervention." Neuropsychobiology. 2005;51(2):77-85.
Molloy CA, Manning-Courtney, P. "Prevalence of Chronic Gastrointestinal Symptoms in Children with Autism and Autism Spectrum Disorder." Autism. 2003. 7(2) 165-171.
I am not a medical professional, nutritionist, or developmental expert. I am a parent. The medical information provided on this site is, at best, of a general nature and cannot substitute for the advice of a medical professional (for instance, a qualified doctor/physician, nurse, pharmacist/chemist, and so on). This site is designed to relate my personal experiences as a parent of a child with autism. Your personal experiences may vary. Always discuss changes in your child's diet with a qualified nutritionist and/or pediatrician.